Experience based design guide

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Using patient and
staff experience
to design better
healthcare services

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Using patient and
staff experience
to design better
healthcare services
experience based design

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© Copyright
NHS Institute for Innovation
and Improvement 2009

NHS_EBD_cover_HR.indd 1



Using patient and staff experience
to design better healthcare services

ISBN 978-1-906535-83-4


Guide
and Tools

19/1/09 09:52:19


1


1

the ebd approach

|

Introduction

She held my hand. That was a big moment.
And it wasn’t patronising; it was just a
professional thing. My hand was lying
over the side of the bed and she [the
speech therapist] took my hand and that
gave me a wonderful message. And she
said something along the lines of, ‘I know
you’ve got worries at the moment and it’s
quite natural to have those worries but
we’ll all be working together on this and
...we’ll get you speaking again’

2

And I was angry too because they
said, ‘the doctor’s coming’, and no
doctor came, and I said, ‘please stay
with me because I feel I’m going to
die’. And I really did, because the
chest pains were so bad and I was
still hallucinating and I just wanted to
know that I was still living and there
was somebody with me. I think it was
absolute terror.

the ebd approach

|

Introduction

Introduction
The ebd approach (experience based design)
is a method of designing better experiences for
patients, carers and staff. The approach captures
the experiences of those involved in healthcare
services. It involves looking at the care journey
and in addition the emotional journey people
experience when they come into contact with
a particular pathway or part of the service.
Staff work together with patients and carers to
firstly understand these experiences and then to
improve them.
This guide is an introduction to the ebd
approach (experience based design) and is
supported by tools and templates that can be
found in the tools section and on the website
www.institute.nhs.uk/ebd.
This guide and toolkit has been produced as
a result of work that the NHS Institute for
Innovation and Improvement has undertaken
in collaboration with NHS organisations and
external agencies, using the experience of
patients, carers and staff to design better
healthcare services.

3

The first section is a guide which provides an
overview of the ebd approach (experience
based design). This will help you to understand
how you can start to use patient and staff
experience in your area of work. The second
part of the publication contains tools and advice
which will help you to put the ebd approach
into practice.
The tools and templates are also available at
www.institute.nhs.uk/ebd. Many of them can
be customised for your local use.
The ebd approach will help you turn the vision
of a patient centred NHS into a reality.
Alongside this guide and toolkit there is the ebd
approach – an introductory DVD and the ebd
approach – Concepts and Case Studies book.

3

the ebd approach

|

Foreword

Running an ebd approach
project including co-design

Understanding more
background

...there is no reason why you shouldn’t
do this. There are time and resource
implications but the rewards are significant.
Read through this guide and
look through the tools and you should
be ready to get started.

Explore

...look at the ebd approach
– Concepts and Case Studies book.

Just trying
something

the ebd approach

...it’s a great way to see
what works for you.

further by

Using the ebd approach
to enhance my existing patient
and staff involvement channels
...there are lots of everyday options open
to you. Look through the tools and you
will have some idea about things you could
incorporate or try out.

4

Involving others
...get others interested and
generate some momentum. Showing
the introductory DVD usually really
motivates people to want to get involved
and do something.

the ebd approach

|

Introduction

Contents
The NHS Next Stage review (2008) led by Lord
Darzi is clear in it’s call for quality of care to be
fundamental to the NHS. High quality relates
to the clinical care and treatments that people
can expect but also that this results in a good
experience. The ebd approach enables
healthcare providers to understand the experience
of healthcare from the patients, carers and staff
perspective to ensure that what might have been
seen as ‘little things’ in the past will be recognised
as an important part of the delivery of high
quality care.
The ebd approach involves patients, carers and
staff in the design of healthcare in a deeper way
than any other process in the NHS. It harnesses
the energy of both patients and staff to make
meaningful and lasting improvements.
Wherever you see the following icons, they are
a reference to a tool relevant to the particular
aspect of the ebd approach.

3

Introduction
The four steps

16

Tools

46

Capture the experience

52

Understand the experience

68

Improve the experience

82

Measure the improvement

90

More information

96


5

the ebd approach

|

Introduction

A foreword from Hugh McGrath
When asked to provide this foreword
I felt a great sense of pride and privilege.
Indeed I had similar feelings when
I initially became involved in the “Your
Experience Matters” project that formed
part of the basis for this guide – the ebd
approach (experience based design).

In March 2004 I underwent surgery at the Luton
and Dunstable hospital to remove a tumour
that had developed in the region of my larynx.
The surgery necessitated the removal of the
larynx and re-construction of my oesophagus.
Had I been asked at that time to complete a
’satisfaction questionnaire’ which, I believe, was
standard practice at the time, designed to assess
the level of service that I had received, I have
no doubt that I would have provided very high
scores for the survey as I would have found it
extremely difficult to express dissatisfaction on
the treatment that I had received.
Following recuperation I attended several ‘user
group’ meetings that were intended to improve
services and thereby patients’ experience.
However, in my opinion, these groups were
more focused on social interaction and were
aimed to meet individual needs as opposed to
service improvement.

6

the ebd approach

Around September 2006 my wife and I were
asked by staff at the Head and Neck Cancer
Clinic if we would participate in the Co-Design
Advisory group – this participation also included
a request to provide an insight to our experience
as patient and carer.
At the initial meeting we were impressed by the
professionalism, dedication and determination of
all the group members that the project should be
different and should ‘make a difference’. Indeed,
it was different and has made a difference.
Throughout the life of the project great
emphasis was given to ensuring that the
principles of the ebd approach would
become an integral aspect of the service
processes and procedures. Only then would
the project have been considered to be a
meaningful success.
I am still involved with the service which I attend
from time to time as a patient and as an active
member of a support group that was one of the
improvements that happened as a result of the
project. I also meet other patients prior to them
undergoing surgery and, where possible, during
their recuperation.

7

|

Introduction

Through sharing experience with others I am
able, where appropriate, to provide feedback
to the clinicians on areas where there is a
perceived need for improvement.
As a direct result of my involvement with the
project I have had the great privilege of meeting
and working with many people, both from the
medical profession and patients, their carers and
families. I have personally gained a tremendous
amount from this experience and I am
grateful to have had the opportunity.
I urge the users of this guide to enter the
process wholeheartedly as I know it can
help make a difference.

Hugh McGrath
Patient, Luton and Dunstable Hospital
NHS Foundation Trust

7

the ebd approach

|

Introduction

Why consider experience
We can now point to more than 40
real improvements in our head and
neck cancer services as a direct result
of this work. That’s very exciting.
Stephen Ramsden, Chief Executive

At the moment we’re using the ‘Lean’
principles to help increase the amount
of time staff have for direct patient
care and anticipating patients’ needs.
This fits with what patients are telling
us through the ebd approach about
their experiences on the ward.
Elaine Hide, Nurse and Service Improvement Lead

8

Many improvement projects will include some
form of patient involvement – but few focus very
closely on drawing out and utilising the specific
experience of patients and staff.
One way to understand the value of
incorporating staff and patient experience into
your improvement project is to look at the
components of good design.
Healthcare organisations have demonstrated
that they have significant skills in improving
the performance and reliability of services but
they have not always placed equal focus on the
aesthetics of experience – how it feels to use
or be part of the service. The ebd approach
provides the opportunity to build on previous
successes by focusing more attention on this
third component – the experience of care.

the ebd approach

|

Introduction

Good
e
servic
design f...
s o
consist
Performance
How well does it do
the job?
Is it fit for the
purpose?

Functionality

Engineering

The Aesthetics of Experience

How safe, well
engineered and
reliable is it?

How is the whole interaction
with the product/service
felt/experienced?

Safety

Usability

(Bate & Robert, 2007, adapted from Berkun)

Within healthcare improvement, there is
a tendency to focus a lot of effort on the
performance and engineering elements of
good service design. This is understandable.
Clearly, gaining access to care and having good
outcomes (performance) along with safety and
consistency of process (engineering) are things
that service users care deeply about.
Until now we have lacked practical tools that are
linked together to form an overall process to help
front-line staff capture, understand and improve
the patients’ actual experience of care. However,
the ebd approach has changed that.

Reducing waits and improving
the quality of care have been
two important outcomes of
this approach for us.
John Pickles, Consultant

9

the ebd approach

|

Introduction

The four steps of the ebd approach
The ebd approach (experience based design)
centres on four key steps, which form the
framework of this guide:
The approach starts with helping people
(patients, carers and staff) tell the story of
their own experiences, in their own way.
It is through these stories that we can begin to
understand not just the care journey, but the
emotional journey people experience when
they come into contact with a particular pathway
or part of the healthcare service. When we
understand and utilise this, we have a powerful
new tool for improving care in the ways that
matter most to the people who use it and the
people who deliver it.

We can all think of times when we have told a
story about a service we have experienced. We
tell those stories because the interactions with
the service have had a big impact on us – when
we tell the stories we are often emotional
and use emotion words. The recognition of
the importance of emotion is a core principle
throughout the ebd approach. Whilst relatively
new to health services, this principle is used
throughout the design industry from which we
have taken some of our learning.
Any service, whether it is booking a holiday
online through to a healthcare process can be
specifically designed to create a positive user
experience. This experience will usually then be
described in terms of positive emotions.
So, this goes beyond finding out what patients
liked or didn’t like about their care. The aim
is to understand how an individual’s contact
with each part of a service made them feel,
for instance:
• confident or confused
• scared or safe
• empowered or insignificant

10

• valued or overlooked.

the ebd approach

Teams in the NHS have ways of identifying
patients’ views about their service – one of the
main ways is through their organisation’s annual
patient satisfaction survey. This is useful, but
does it give us the best insights about where the
service needs to change?
The quotes on page 12 provide examples of the
rich, experiential detail that have been captured
through the ebd approach. They give insights
into the emotions that individual’s were feeling
as they came into contact with different parts
of a service, and as they experienced different
stages of their care journey.

|

Introduction

Exper
ience
sha
mean
s givin ring
patie
g
and s nts, care
taf
rs
space f the tim
to re and suppor e,
of th call the pa t
e
rt
had t service th s
he
at
impac greatest
t on t
hem.

You can see a progressive change over
time in the way in which they [staff]
get more confident in working with
patients and can talk to them about
stuff that isn’t clinical; I’ve seen that
change. I can see that they seem to
be envisaging a future where they
will work with patients rather than
without them.

Leaders and managers may have
a wide variety of knowledge and
specialist skills, but only users have
that unique personal knowledge that
comes from having experienced the
service or product first hand, of being
on the receiving end, and the specialist
insight that gives as to how it might be
made better in the future.


Source: Bate and Robert, 2007

11

the ebd approach

|

Introduction

As well as being useful for all frontline staff,
the ebd approach is the natural next step
in any improvement project work. Whether
you call your existing approaches Total Quality
Management, Continuous Quality Improvement,
Lean, Six Sigma, Organisational Development, or
any number of other labels, our emphasis here
is on building on and extending your work to
better include the third and vital element of
good service design – user experience.

When I’m poorly I like
to stay in my pyjamas.
But one day the
healthcare assistant
said in front of everyone
– ‘Why don’t you get
some clothes on?’
I know she was only
trying to encourage
me, but it made me
feel awful

12

Staff who have used this approach, especially
those at the frontline of delivery or patient
involvement have been very enthusiastic.
It does more than pay lip service to involvement
and has a positive impact on patient, carer, and
staff interactions.
I was desperate for encouragement
and reassurance – even when the
tea lady on the ward said I was
looking better than a few days ago
– I was absolutely over the moon.
The right remark at the right time
goes such a long way

User
Experience

When you come into the
mobility office waiting room
the chairs are arranged in a way
so you have to be an expert
[wheelchair] driver just to get
through the door…
It was a nightmare…

The clinic itself was a
terrible place to be.
People looked anxious
and ill and I could hear
one patient talking
about how horrendous
radiotherapy was.
Something inside me
died at that point.
I thought: is this how
it’s going to be – is this
really my future?

the ebd approach

|

Introduction

Improvements that have been made
using the ebd approach
NHS teams that have used the ebd approach are reporting significant levels of service and
organisational improvements and show improved relationships between patients, carers and staff.
Some of the improvements achieved by using this approach include:
Reducing waits and overcrowding for
patients and giving staff more time with them
by introducing a new appointment system in
the outpatient clinic
Redesign within the post-surgical ward
– giving patients the quiet space they need
and making it easier for staff to store and
locate vital equipment
Helping staff to respond safely and
quickly to patients with tracheostomy or
stoma needs by increasing training and
redesigning roles including an extended role
for healthcare assistants
Preservation of dignity by removing
weighing scales out of public view
Creation of a safer environment within
a stroke unit by having toilet roll holders on
both sides of the toilet

Configuration of a ward in order to provide
space that can be used as a patient /relative
sitting area
Design of a ‘Patient Passport’ to provide
information about inpatient stay and contact
details of the different health and social care
professionals involved in their care
Colour coding ward bays through the
use of different paints to help patients find
their way back to their bed, giving them
greater independence
Increase in the level of specific training
to enable 20 more staff to use patient
experience in service redesign
Enhancing two roles in the trust
to recognise and support similar
patient-focused pathway work

13

the ebd approach

|

Foreword
Introduction

Certainly all the staff I’ve met have
impressed me with their enthusiasm
for the project and enthusiasm for
improvement. It’s almost as though
there’s been some sort of injection into
the staff. I think it’s something that was
perhaps waiting to happen, and they
needed a catalyst.

The whole experience has helped me to
grow as a professional and an individual.
It’s prompted me to act on some of the
things we’ve wanted to do for ages –
looking at staff competencies on the ward
for instance; improving training; and setting
up a fund to finance some of the changes
we want to make.
Carole Glover, Clinical Nurse Specialist

June Edwards, Patient

Help your
patients
feel like
this...
The thing that’s amazed me
about this whole experience is how
much can actually be achieved with
little or no money – simply because
we’re working as equals alongside
staff, sharing ideas and finding
commonsense solutions.
Sheelagh Wren, Patient

14

...and your
staff
feel like
this

The difference between trying to make
improvements in the past and this approach
is that patients are involved right from
the beginning. And that’s why I feel there
has been greater progress and greater
improvement in the head and neck service,
whereas in the past it’s just fizzled out.

the ebd approach

|

Introduction

Just before you get going
The experience of those teams already using the
ebd approach has highlighted some important
principles that are worth understanding right
from the start.

Senior leadership support
For lasting benefits to patients and staff, you
need more than the approval of your senior
leaders; you’ll need their active involvement and
visible support. You could start by showing your
senior team the short experience based design
film on the DVD with the introduction to the
ebd approach.

Patient consent
The National Research Ethics Service has advised
that no formal ethical review is needed prior to
using the ebd approach and other experience
based co-design methods (as long as the work
is conducted for service improvement purposes).
For more detail, see www.institute.nhs.uk/ebd.
However, you will still need to apply good ethical
principles in your work, including getting full,
informed consent from all the people who share
their experiences and stories.

15

Because the ebd approach involves people’s
emotions, always try to ensure that the needs
of staff, patients and carers are considered
throughout the process.
See page 66 for a Patient consent
form to use in your interviews

Time and resources
You can add value to any improvement work
you are doing by taking a little time to better
understand the experiences of those delivering
or receiving care. This might range from doing
some short interviews in a clinic to find out what
the experience is like and then organising your
team to act on this, to setting up and running a
project that starts from understanding people’s
actual experiences and then involve them in codesigning and implementing improvement. The
amount of time and effort you need will differ
and it is important to be realistic about this. For a
project that includes co-design as a core element
you will need to develop a plan with key people
and a shared understanding of the improvement
aims, key milestones and timescales.
See page 48 for more
information about Roles
and structures

15

the ebd approach

|

The four steps

An introduction to the four steps
There are some important steps that will help
you use this approach. Although most of these
steps are straightforward, they may involve
doing things you’ve never done before – such as
filming patients in their own homes or using an
emotional mapping tool.

The ebd approach is an improvement approach
and while we suggest that you carry out certain
steps, there is no ‘textbook’ way that has to be
strictly followed. The approach recognises that
the NHS is complex and diverse and the range of
tools and steps presented here are designed so
that they can be used flexibly.
Teams who have used this approach have
adapted it to fit local circumstances. And we are
constantly learning from other experience-based
improvement work both inside and outside
the NHS.
Please share your learning and experience of
using the ebd approach via the website:
www.institute.nhs.uk/ebd

Staff are equals in the process and it’s
just as essential to hear their stories
and emotions first-hand.
Gill Husband, Risk Management Lead

16
16

the ebd approach

|

The four steps

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Capture

Understand

• Getting patients and staff involved
Capture
• Helping people tell their stories
• Identifying emotions
• Mapping emotionalUnderstand
‘highs and ‘lows’
• Finding touchpoints

Improve

• Co-design – turning experience
Improve
into action

Measure

Tools to
download
and
customise

• Evaluating and sustaining
Measure
the improvement

17

the ebd approach

|

The four steps

Getting patients and staff involved
• Ensure that you link with a senior leader
– who can provide you with support. Highlight
how this work, involving patients, supports the
overall strategy for your organisation.
• Raise awareness of what you are doing by
holding some informal awareness sessions,
inviting staff and patients to watch the ebd
approach introductory DVD and find out why
this approach is so different.
See page 50 for more information
on Getting patients and staff
involved
• Involve staff because you need to understand
the service from their perspective. Start with
one or two staff members and encourage
them to help you spread the word.

18

• Engage patients and carers through
frontline staff to ensure they (especially
those who are ill or vulnerable) are
approached sensitively by people who they
are familiar with. Staff have very important
relationships with patients and can help to
get them involved. Consider contacting local
patient groups and voluntary agencies and
seeing if they can help you to find people
who have used a particular service.
• Understand the roles and make sure
everyone understands what they are being
asked to do and what goals and timescales
you’re working to.
about Roles and structures
• Get a wide range of perspectives. Some
people will not put themselves forward even
if they think the ebd approach is a good
idea. Gentle encouragement can be given to
patients and staff who are seldom heard or
don’t put themselves forward immediately.
• Be flexible and aware that different patient
and staff groups will have different levels of
investment in a service and this might impact
on how much time they will want to give.

the ebd approach

• Give people time to think. This is an
exciting process, but don’t expect everyone
to understand how valuable it is immediately.
Create time to build up conversation,
understanding and enthusiasm.
• Persevere – staff and patients can get more
enthusiastic once they have the opportunity to
talk about their experiences of the service.
• Maintain awareness and enthusiasm
by communicating well – remember to
thank people for their input and to share
insights/results.

Our partners in the Stroke Association
do a lot of work locally visiting people
in their own homes. We asked them
for help and they did an excellent
job, not only of selecting potential
candidates for us to approach, but also
paving the way for us to call them and
explain why we wanted their input.

|

The four steps

Expectations
One of the things that makes this approach
so different and exciting is that it does seek
staff experiences as well as those from patients
(perhaps for the first time in any meaningful
way). It is really important to give time for both
staff and patients to share their experiences.
We have found that in the beginning this is
best achieved through separate meetings, and
later in the process both staff and patients can
come together.

Patients’ reactions to the approach
Teams have had a lot of positive feedback from
patients and carers who have been involved in
the ebd approach. It is important to recognise
that patients have commitments outside of the
project and even though they might enjoy the
work, they may not remain actively involved
throughout the whole project. We have found
that some are more active in the beginning,
some throughout and some choose be more
involved later on. A small number of patients
can provide much valuable information. So do
not worry if the number of patients who are
actively involved changes. Every input is
relevant and important.

19

the ebd approach

|

The four steps

How to capture the experience
There are many ways to capture experience,
there is no right or wrong approach, here are
some ideas, but feel free to experiment…
• Interviews: Storytelling is at the heart of the
ebd approach and centres around giving
patients and staff the time, encouragement
and help they need to describe their personal
experiences in their own words.
One of the most effective ways of gathering
stories is through one-to-one interviews with
patients, carers and staff. Sometimes this
may not be possible and some alternative
techniques are outlined in this section.
Interviews can be time-intensive, but teams
have found that the richness of the information
that comes back is well worth the effort. It is
also worth considering filming the interview.
Although this may be a little daunting at first,
our experience is that it can really help to share
the project with a wider group.
See pages 57-63 for more information
on interviews and filming them

20

• Experience questionnaire: Asking people
to complete an experience questionnaire
can be really valuable and provides a simple
approach to capturing feelings and experience.
With some simple adjustments this
questionnaire can also be used by staff to
identify their experience of delivering the
services, for example frustration at having
to wait for results.
on experience questionnaires
• Diaries/journals: Most people are familiar
with keeping a diary or journal and because
everyone knows how they work, they can
be a good option for patients (those who
are well enough to keep them), carers and
staff. Diaries can be printed books, simple
sheets of stapled paper or you can invest in
digital voice recorders.
• Photographs and photo journals:
Experience can be captured through
photographs. Patients, carers and teams can
be given disposable ‘camera packs’ or use of
a digital camera to take away and record
their experiences.

the ebd approach

• Observation: Observation is a very important
tool when working with patient and staff
experience. It can help you really understand
different perspectives, but also prompt patients
and staff to talk about their experience of
specific elements of a service. The benefit in
all observation is that it helps you to really
focus on the actual environment or service you
are trying to improve. This makes sure that
any improvement is always grounded in what
actually happens, rather than what people
think happens.
See page 25 for some quick tips
and pages 64-65 for more
information on observation
• Shadowing: Accompanying a member of staff
as they go about their normal day or a patient
as they experience their care journey, can help
you to see things through their eyes. You will
need to ask people if they are comfortable
with this approach. It is also a method that
allows you to ask questions which prompt a
‘running commentary’ from the person you are
accompanying. Recording this will give you a
detailed, first-hand picture of the experience,
role, approach, philosophy and tasks of the
person being shadowed.

|

The four steps

I have a lot of experience
of doing one-to-one
interviews with patients
and capturing people’s stories
on film is not only a lot
easier (no need for frantic
scribbling and transcribing)
but it has an immediacy and
impact you can’t usually
achieve in writing
Gill Husband,
Risk Management Lead

21

the ebd approach

|

The four steps

• Conversation cards: Conversation cards can
help you initiate conversation with patients
and family members. In one American cancer
centre, patients in a clinic waiting area are
routinely invited to look through the cards and
choose a topic of most interest or concern to
them at that time: e.g. ‘waiting’, ‘parking’,
‘my test results’. Each manager at the clinic
now spends two hours per week in the waiting
area with the cards, moving from patient to
patient to have conversations. Although met
with some resistance by some staff members
who were not part of the initial design team,
the staff report that the time spent engaging
patients with the cards is some of the most
rewarding time at work.

22

• Focus groups and ‘listening labs’: Traditional
research makes extensive use of focus groups
and listening labs. Listening labs (which
can involve a group of people or simply an
individual recounting their experiences)
can be a useful strand in your experience
gathering work. You need to be careful that
a group does not work at a superficial level.
Skilled facilitators will be able to make people
comfortable with sharing personal experiences.
• Compliments and complaints: These can be
used as a starting point to capture experiences.
on using experience when working with
compliments and complaints

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the ebd approach

|

the ebd approach

The four steps

|

The four steps

How do you feel?
This experience
questionnaire will
help you think
about how you feel
at different stages
in your journey.
Circle the words that
best describe your
feelings at each stage,
or write your own
words at the bottom.
See pages
54-55 for more
information
on experience
questionnaires

Arriving/Checking In

Information

Waiting

Going to Theatre

Recovery

Check Ups

Leaving

happy

happy

happy

happy

happy

happy

happy

supported

supported

supported

supported

supported

supported

supported

safe

safe

safe

safe

safe

safe

safe

good

good

good

good

good

good

good

comfortable

comfortable

comfortable

comfortable

comfortable

comfortable

comfortable

in pain

in pain

in pain

in pain

in pain

in pain

in pain

worried

worried

worried

worried

worried

worried

worried

lonely

lonely

lonely

lonely

lonely

lonely

lonely

sad

sad

sad

sad

sad

sad

sad

Write your own words here







Why?
We’d like to know why
you felt like this. Was
it friendly staff, a nice
conversation, or a long
wait – whatever it is
we’d like to know.

23

Download this from

24

the ebd approach

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the ebd approach

The four steps

|

The four steps


Quick tips on observation
Take a step back and look at what
is happening with fresh eyes. Try to
imagine that you are a patient, a visitor,
or a child – what do you notice and how
would you feel?

Get people to show you what they
do rather than tell you. You want to see
what happens, rather than what people
think happens, or what they would like
to happen.

Just sit and watch what goes on.

Keep an open mind. Try not to correct
misinterpretations. It is important to
understand that someone’s experience
is their ‘truth’, even if from your
perspective it is inaccurate.

Don’t forget your other senses; think
about what you hear or smell.
Don’t jump to conclusions or
solutions. Observation helps to inform
you, but you need to work with others to
understand what changes to the service
may be useful.

Look out for pauses, obstacles,
body language. What do people care
about and, how they have adapted their
environment to make it work for them?
Be aware of things that surprise you.

25

Whatever your sources of information on patient,
carer and staff experiences (e.g. interviews, films,
transcripts, forum feedback, surveys, complaints,
compliments) you are looking for the same thing
– emotions, which are the route to
understanding people’s experience of the care
process.
In other words:
• What people feel when they use your service
• When they feel it
This section will enable you to map what people
feel and when they feel it. The way in which
you do this will be dependent on what you
have captured, sometimes you may do all of
the elements separately or they can also be
combined into one activity. The principles are to:
• Identify emotions
• Find the touchpoints
• Map the emotions to the touchpoints

26

Identify emotions
Identifying emotions involves looking for words
or phrases that directly describe the emotional
impact of a care experience – whether positive
or negative – from the information that has
been captured. These words may already have
been identified if, for example, you have used
the experience questionnaire. They are personal
to the individual using them and are crucial in
leading us to the parts of a service that have the
greatest effect on patients and carers.
Don’t worry about whether you may be missing
some words or whether the ones you are
identifying really are emotion words – if you
think they tell us something about how a person
was feeling, they are likely to be right.

the ebd approach

Guide to identifying emotions
• Review the captured material and identify
words or phrases that describe the emotion
of the individual. Doing this activity with other
people in your team, or patients and carers
will give you confidence and they may spot
other useful emotion words that you might
have missed.
• There will be direct statements such as
‘I felt like’, or ‘it felt like’. Remember to also
look for words or phrases that indirectly
describe how the patient is feeling. For instance
‘kind staff’ indirectly describes a positive
emotion. Don’t worry about pinpointing the
emotion behind these now – just get them on
the list.

|

The four steps

In the early days of the airlines they
(touchpoints) were referred to as the
“moments of truth”, the crucial times
when you call to make a reservation
to take a flight or when you arrive at
the check-in desk when your overall
view of the airline, good or bad,
is formed.
Carlzon 1987

The ebd approach is about
capturing emotions, but that doesn’t
make it a soft or fluffy process.

27

the ebd approach

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The four steps

Identify touchpoints
A touchpoint is any moment where a user
interacts in some way with the service. In the
NHS, for instance, touchpoints might be:
• When you phone your doctor’s surgery
for test results
• When you first see a consultant for
your diagnosis
• When you go down to theatre for
your operation.

A pathway or process map* gives an
understanding of the concrete steps or
activities of the process. This is a good start,
but touchpoints are not limited to the process
steps of care, as they are based on the patients’
‘subjective’ experience of care. By systematically
identifying the touchpoints, you can map the
most important elements of a service from the
point of view of the patients who experience it.
*More information about process mapping is available
in the improvement leaders guides at:
www.institute.nhs.uk/building_capability/building
_improvement_capability/improvement_leaders’
_guides:_introduction.html

The whole emotional mapping exercise was
a clever idea. It helped us look again at all
aspects of our experience: from the fall
itself and the ambulance arriving; to the
pain; the operation; how much information
we were given; right through to going back
home. It helped me think about some of the
things that could have been better.
Joan Taylor, Patient

28

the ebd approach

On page 30 is an example of a simple process
map. It shows the stages of care in an outpatient
clinic (the green boxes), but it also shows some
key patient touchpoints (the speech boxes).
These are anecdotes or parts of a patient story
that have revealed a touchpoint at a specific
stage of the journey through the clinic.
Sometimes, the most important touchpoints
won’t be formal parts of the care process
because this is about a patient’s actual experience
and they might not even be identified on an
initial process/pathway map (e.g. when a patient
walks into the hospital reception or comes out of
a hospital lift and tries to work out where they
need to go).

|

The four steps

t
er tha
b
Remem points
touch
be
ay not are
m
at
ints th ed on
po
i
identif tional
i
a trad map.
s
proces

29

the ebd approach

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The four steps

Take a
look at
some r
e
experi al patient
en
outpati ces in an
ents c
linic.
You have to get there
early to claim a seat

Patient arrives
at clinic

30
26

Reception opens
at 9.30am

There was also an
orthopaedic clinic
going on. I wonder
what happens if you
wander into the wrong
clinic? Do they just do
something to your
hip instead?

touchpo
ints
stages
of car
e

Patient registers
with reception

The receptionist
was so friendly
and helpful

Patient sees surgeon
and oncologist

Not being able to
take it all in especially
when being told bad
news and information
about what to do next

the ebd approach

The four steps

I feel overwhelmed,
I just want to escape...
but can’t. I’ve got to
go straight to see the
specialist nurse

This much moving about
seems disjointed

Patient sent for
chest X-ray in a
different
department
(another process)

|

Patient back
to clinic to
see doctor

Seen by appropriate
specialists e.g.
Specialist nurse
or Speech and
language therapist

At least I have some
information and a plan.
That makes me feel a
bit better

Patient leaves clinic
with 2-week
appointment date

I am exhausted seeing
so many people at the
same time. I cannot
remember most of the
information that I’ve
been told

31

the ebd approach

|

The four steps

The ebd approach to finding
the touchpoints
• Review the experience resources one by
one (e.g. the patient’s story, diary, complaint)
looking for instances where a patient is
describing how they felt during contact with
the service (a touchpoint).
• Patients/carers’ focus may not be what you
expect as it is their experience of interaction
with the service, not a comprehensive review
of the pathway.

Mapping touchpoints to emotions
Having identified the emotions and touchpoints
from the patients’ perspective there are options
about how that might be taken forward. It might
be obvious where the emotions map to the touch
points. Once the emotions and touchpoints are
linked then it is important to feedback to the
patient, carer and staff groups, or individuals to
ensure there is agreed understanding. There are a
variety of ways this may be done for example,
a specific emotional mapping workshop.
on how to run an emotional
mapping session

Emotions and touchpoints example
On the next page are some excerpts from a
tape-recorded interview where a patient is
describing their experience of having surgery.
The column on the left gives excerpts from
the story. The other two columns give the
emotion words and touchpoints that have
been identified.

32

the ebd approach

Patient describing their experience of having surgery

Emotion words

So when I went home, I got on the internet and it actually
sounded very daunting. So I had a week. So when I came in
on the Thursday morning, I knew I had the opportunity to see
the consultant and I got a little green book which was full of
questions and all the stuff that I wanted to find out and we
went through it again and I asked him what would happen
if I decided to withdraw.

Daunting

He knew that I’d been a nurse and he said, I think you know
what would happen next. And then he talked about if you
left a lump untreated and everything, and I just said to him,
well, I don’t have a choice then. You must do it. So that was
okay. And …it was all right, because my husband was able
to stay with me.

No choice

And they looked again and said, we’ll just release a stitch…
and at eleven o’clock at night I was told, you have to go back
to theatre. I had to go all the way to the downstairs theatre
and I actually didn’t say anything to anyone, but I felt that
that was one time I could die. I felt so bad about it.

Did not speak

But anyway we got back about five, and at eight o’clock the
three consultants were round my bed and I looked at them
and said, I think I look better than any of you do! And I found
it was very much give and take with them. They were so
kind, and Friday was quite a good day.

Give and take

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The four steps

Touchpoints
Searching the
internet
Information
from consultant
and written
material

Okay
All right

Felt I could die

Discussing
decision to
have surgery
Carer able
to stay with
patient
Post-surgical
complication

Felt so bad

Better

Waking up
after surgery

Kind staff
Good

33

the ebd approach

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The four steps

You can use the rich understanding and insights
that you have gathered through the Capture the
experience and Understand the experience
phases of the ebd approach and link these
into a number of core areas of work that you
might already be involved in. For instance, this
information may provide you with a better
understanding of complaints that might have
been received; or they could provide valuable
information to support a current improvement
project or other service re-design work.
Some of the information gathered will lead
you almost instantly to be able to make an
improvement, but in addition to these you
will find areas that are much more complex
and require time to develop a number of ideas
around potential solutions. If you are looking
to generate a number of different or innovative
ideas, the book Thinking Differently can help
to get you started – go to www.institute.nhs.
uk/thinkingdifferently.

34

Involving staff, patients and carers in not only
sharing their experiences but also in developing
ideas and potential solutions is a really good way
of making sure that actions are more likely to
meet all their needs. This ensures that experience
is the focus of the solutions. Working in a
collaborative way with staff, patients and carers
is called co-design.

The benefits of co-design
Co-design does take some planning,
co-ordination and a different mindset – not
many teams are used to working with patients
as genuine partners and this can cause some
apprehension at first.
The essence of co-design is to generate a
shared understanding between patients, carers
and staff. It is this understanding that leads to
a different perspective on the service and the
improvements that could be made.

the ebd approach

Sites who have used a co-design approach have
found that it is:
• A natural way to progress the relationships that
have already emerged between patients and
staff in earlier stages of the ebd approach
• A way to actually lessen the workload on staff;
with patients and carers taking on many of the
improvement actions themselves
• A way to keep up the momentum of change
– where patients are part of the change team,
they bring enthusiasm, drive, energy and a
level of expectation.

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The four steps

There’s a lot of lip service paid to the
whole idea of patient involvement.
Some services think they can invite
a patient to sit on a committee and
that’s the ‘involvement’ box ticked. Of
course that just isn’t enough and we
have to get beyond the token gesture.

Co-design is about getting the right people,
setting up the right structures, the right events
and being organised. In this respect it is the same
as many improvement or redesign initiatives.
on Roles and structures
We recognise it is often reassuring to see how
others have tackled things and what they learned
along the way. The Head and Neck Cancer
Service at Luton and Dunstable Hospital NHS
Foundation Trust were one of the first NHS teams
to use the co-design approach. The next pages
show what they did, and some of the reactions
they encountered on their journey.

35

the ebd approach

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The four steps

• Invested a lot of time getting
staff interested and on board

Whatid
we d

• Got patients and staff together
(separately at first) to:

• Approached patients
and built trust

reflect on their stories and
experiences (good and bad)

• Asked patients to keep journals;
photo diaries and interviewed
them on film

identify and map the touchpoints

• Interviewed staff on film

• Brought patients and staff together
to share experiences and agree
priorities and actions

Capture
the experience

When patients were telling their
stories about the outpatient
clinic, they described their
bewilderment at the bombardment
of information from different
professionals and the confusion
caused by an overcrowded
waiting room

36

Understand
the experience

Working with patients like this
was new territory for us, but we
needn’t have worried. The meeting
soon developed into a fascinating
and rewarding session as patients
began to tell their stories and we
all worked together to map the
experiences and emotions being
described on the day

Nurse specialist

Nurse specialist

the ebd approach

• Created a number of smaller
‘co-design’ teams of patients
and staff to take forward agreed
actions
• Involved patients as equal
partners in redesigning services
• Made 43 concrete improvements
to the service, some of which
were simple and others
more comprehensive service
developments

Improve
the experience

The thing that’s amazed me about
this whole experience is how much
can actually be achieved with little
or no money – simply because
we’re working as equals alongside
staff, sharing ideas and finding
commonsense solutions

|

The four steps

• Having patients involved
throughout give you a kind of
instant measure and check that
any changes you make are an
improvement
• For more comprehensive changes,
appropriate measures were
developed
• Used the enthusiasm of patients
to keep us mobilised

Measure
the improvement

I actually enjoy going
to the clinic now for my follow-up
appointments. It’s a much more
user-friendly place to be
Patient

What
people
said

Patient

33

37

the ebd approach

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The four steps

As with any improvement work, it is important
to be able to evaluate the impact and success
of your ebd approach intervention. This isn’t
about measurement for measurement's sake.
Measurement will help you understand the
difference your work has made and, importantly,
enable you to celebrate, share and sustain the
improvement.
There is a vast amount of guidance and literature
to help the NHS get better at measurement.
In the ebd approach, success can be measured
in terms of:
• Subjective outcomes (for example, the way
patients feel – their experience) – you can use
experience gathering techniques to capture
this information
• Objective outcomes (for example, reduced
waiting times; fewer critical incidents;
improved performance, safety and reliability)

Remember to think about what you will
measure and how you will measure it at the
start and throughout your project.
By emphasising experience you often find
that both patients and staff are more likely to
complete your measurement tool. You should
also consider ways that the rich, experience data
can be fed into the more standard reports that
are used within your organisation.
Measurement methods can range from formal
to informal and quantitative to qualitative. There
is no single best way, but to help you decide on
your measurement mechanisms, just think about
the following:
• Know what success will look like
• Understand what matters; measure what
matters; change what matters – in other
words, assess against what was considered
important at the outset

You can think about measurement tools being
another touchpoint of your service, and in their
own right they should be designed to create the
right experience, as well as gathering useful data.

• Evaluate for learning, not just for what
worked – regardless of what happened there
is a chance that you will have learned
something that will help you do it better the
next time round*

38

*Source: based on Bate, S.P. and Robert, G (2007)
Bringing user experience to health care improvement:
the concepts, methods and practices of experience
based design. Oxford; Radcliffe Publishing

the ebd approach

And finally…
If you have got to the end of this guide,
hopefully you will feel enthused about trying
out some elements of experience based design.
We can’t emphasise enough that the ebd
approach is not a prescriptive ‘you have to do it
like this’ approach.
Anything that you can do to start to consider,
work with and improve patient, carer and staff
experience is great. If you are stuck for the next
step, the next few pages give some ideas about
how you could build experience into things
that you may already be doing. You could also
look through the tools, or the ebd approach
concepts and case studies booklet to see
examples of what others have achieved.

35

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The four steps

Where people have made the first steps to try
out the ebd approach, they always find that
other staff are interested in what they are doing.
So don’t feel daunted, think about what small
steps you can make to start on the journey of
designing better healthcare experiences for
patients and staff.

Think
could us about how yo
u
e expe
rience
...
The n
ext fe
w
give yo
u some pages
about h
ideas
using e ow could build
xper
things ience into
already you may
be doin
g.

39

| The four steps
Experience Based
the ebd approachDesign | TOOLS

Think about how to use experience...
...in your improvement
project

Your current approach to engaging
patients and staff in your
improvement project might include...

...when working
with compliments
and complaints

• Gathering information about the service area
you are seeking to improve, for example:
- patient surveys and interviews
- compliments & complaints
- patient focus groups
- process mapping

...in patient forums

• Inviting patients and carers to become active
members of an improvement project’s
steering group
• Analysing the information gathered through
the routes identified above, and using this to
identify key points where improvement efforts
should be focused. Process mapping is a tool
often used in this process – see the Improvement
Leaders Guide to process mapping*

40

• Staff and managers often take action based
on their own professional assessment and
knowledge of the service area being improved
and from good practice elsewhere – some teams
create opportunities to ‘check back’ with the
patients and carers involved with the work to
ensure the improvement is on the right track
*Find the improvement leaders guides at:
www.institute.nhs.uk/building_capability/building
_improvement_capability/improvement_leaders’
_guides:_introduction.html

Experience Based The four steps
the ebd approach | Design | TOOLS

An ebd approach might include...
• As well as involving patients and carers in your
advisory group you could engage a number of
patients in your project and ask them to share
their own experiences of the service or process
See pages 54-63 for more
information on sharing experiences
• Use what you have learned from patients’ and
carers’ stories to identify the emotions and
touchpoints (key moments and interactions)
in a pathway where people’s emotions and
experiences are shaped – this information can
add important detail to your process map
on identifying touchpoints

An ebd approach including
co-design might include...
• In addition to collecting patient and carer
stories, collect experiences and stories from
staff too, using the same techniques
• Involve patients, families and staff in emotional
mapping, helping them to highlight points
within their journey which they remember with
emotion. These will form the touchpoints in
a pathway where emotions and experience
are shaped
• Encourage the patients who have provided
their stories to continue working together with
staff to help with actually co-designing an
improved service or process
See pages 70-75 for more
information on experience events
and co-design events

• Review the process map that has been
developed highlighting patient and carer
emotions to clearly identify the actions that
need to be taken to improve the patient
experience of care

• Invite patients and family members to work
with staff to prioritise and implement the
actions needed to improve the service

• Work with staff to implement and then later
review the changes made

• Bring together patients/family members and
staff to review the improvement

• Communicate with patients about the actions
being taken, the changes made and invite them
to review the improvements

• Capture the on-going experience of patients
and staff currently using or delivering
the service in order to sustain the
gains and make things even better

41

the ebd approach

|

The four steps

project
...when working
with compliments
and complaints
ave
n’t h tients
o
You d or pa
nts
ait f a complai
to w ite
re
wr
befo
to
er
lett u act.
yo
s
ience ily
per
k ex nts, fam
See atie
p
o be
rom staff t ive.
f
t
and
proac
more

42
40

Your current approach to using
feedback might include...
• Patients send a letter identifying areas of
compliment or complaint
• Staff gather understanding from the information
given within the compliment/complaint
• Key aspects of the complaint/compliment are
identified e.g. kindness from staff, long waiting
time, poor communication
• Staff and managers take appropriate action,
based on consultation with colleagues and
professional assessment and knowledge about
the particular area
• A response is developed and sent to the patient
detailing actions that have or will be taken
• Once implemented the changes are reviewed by
staff to ensure the problem is resolved
• Compliments and complaints are audited

• Arrange to talk to the person who is making
the compliment/complaint, either by telephone
or face to face if appropriate (care and advice
must be taken if there is any possibility of legal
action). This will get you even closer to the
person’s experience

the ebd approach

|

The four steps

• Pinpoint the ‘emotion’ words within the text of
the letter, or as you speak to the patient


on identifying emotions

• Rather than waiting for compliments and
complaints you can be proactive in gathering
and understanding staff and patient
experiences of delivering and receiving care

• Create an emotional map to help you identify
the ‘touch points’ – key moments and
interactions in a pathway where emotions and
experience (good or bad) are shaped
on emotional mapping
• Talk with staff in the service area too,
sharing the compliment/complaint and
gathering their views
• Work with staff in the service area to
strengthen or replicate areas of compliment or
in the case of complaints gather their views on
what went wrong and what could have been
better. Following this, staff should identify and
implement improvement actions

• Capture these experiences using different
mechanisms e.g. through photo journals,
diaries or films created by patients and staff
• Identify the emotions in the stories you
have gathered
• Involve patients, carers and staff in mapping
these emotions. Together, find the touchpoints
– the key moments and interactions in a
pathway where emotions and experience (good
or bad) are shaped
• Invite the patient and/or a family member to
actively work with staff to help identify,
prioritise and implement the actions needed to
improve the service

• Communicate with the patient and family
about the actions

• Bring together the patient, family and health
care staff to review the improvement

• Review the improvements made with staff

• Capture the experience of other patients and
staff currently using or delivering the service

• Invite the patient and family to review the
changes made

43

the ebd approach

|

The four steps

project
...when working
with compliments
and complaints

Your current approach in using
forums might include...
• Patients are invited to participate in a forum
which either has a specific focus (for example;
about a proposed extension to services) or
which is for general commentary (for example;
an annual review)
• Comments and feedback from forum members
are collated and shared
• Key themes are identified, for example concern
about capacity, poor communication, as well as
services that have gained positive recognition
• Staff use this information to identify and
implement potential changes based on their
professional assessment and knowledge
• Changes made are reviewed and fed back
to staff and the forum participants

• Invite staff to forum events to hear
experiences first hand. Gather their views on
what went well or could have been better

44

• Make contact with any forum members
who have given feedback. Explain why their
experiences of care and stories are important
and ask them if they would talk to you in
greater depth. This will get you even closer to
their experiences

the ebd approach

• Talk with staff involved in any service area
identified by forum members as good or
poor – explain the ebd approach and gather
their views
• Use what you have learned by talking to
patients and staff in greater depth to identify
emotion words – either as you speak with them
or by later reviewing what they have said
• Create a map of these emotions to help
you identify the touchpoints – i.e. the key
moments/interactions in a pathway where
people’s experiences (good or bad) are shaped
See page 28 for more information on
identifying touchpoints
• Work with staff in the service area to identify
and implement improvement actions
• Communicate with the forum members
about the actions
• Review the changes made with staff
• Invite forum members to review changes made
• Provide feedback on the work and actions
undertaken to subsequent patient forums as a
example of the work you are doing to capture,
understand and action improvements for
patient, carer and staff experiences

|

The four steps

• Proactively seek views and experiences from
patients, families and staff on your service or
pathway
• Capture these experiences using different
mechanisms e.g. through stories, diaries or
films created by patients and staff
• Use the stories you have gathered to populate
a more detailed process map showing the
different stages of the service/care pathway
• Use emotional mapping to identify where the
touchpoints occur and involve patients, families
and staff in this process
on emotional mapping
• Invite patients and carers to actively work with
staff to help identify, prioritise and implement
the actions needed to improve the service
• Bring together the patient, family and health
care staff to review the improvement
• Capture the experience of other patients and
staff currently using or delivering the service

45

Tool

Tools and approaches
Introduction to the tools

47

Roles and structures
Tools to help raise awareness


52

Tools to help people tell their stories


68

Tools for understanding patient and staff experiences


82

Tools to turn experience into action

Tools for evaluating and measuring the improvement

46

90

the ebd approach

|

Tools

This section contains a variety of tools
and approaches
These tools have been developed to support you in using the ebd approach.
They have been developed with
NHS teams who have used the
ebd approach to design better
The tools are divided into
the four steps of the ebd
approach:

Remember to refer back to the
guide for information on the
tools and where they fit into
the ebd approach. There are
examples of them in the ebd
approach – Concepts and
Case Studies book.

Thin
meas k about
urem
ent
from
the
star
t of
proje your
ct.

Capture
the experience
Understand
the experience
Improve
the experience
Measure
the improvement
All tools are available to
download from the website and
some of them can be amended
for local use.
Look out for this icon.

Download this from

47

the ebd approach

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Tools

Roles and structures
Here are some examples of the roles and structures that you might want to
consider when using the ebd approach. You will recognise many of these as
being similar to the roles and structures used in service improvement projects.
Core team
The core team is made up of
those people who are directly
responsible for delivering a
particular service. This will
include members of the
multidisciplinary team.

48

It is important that the senior
leader responsible for the
service is involved. You may
want to bring other members
of staff into this group, this
might include people who are
interested in learning about
experience based design.
The core team will meet
regularly and be responsible
for all aspects of the initiative
just as in improvement projects
or any change management.

The patient group
During your ebd approach
project you should build a
group of patients who are
willing to participate in the
project.

Staff
Once you have identified the
pathway or service area that
you are working on you
should seek to engage
staff who work in
that area.

the ebd approach

Advisory Group
The advisory group consists of
key stakeholders. This group
meets on a regular basis (1-2
monthly) and provides advice
and overall direction to the
work. It is recommended that
the advisory group includes
senior leadership as well as
patient and front line staff
representatives.

If you are using a
co-design approach the
following groups are
important.
They work together to
identify and implement
improvements in key
work areas which
result in the design of
different experiences.
Co-design group
The co-design group consists
of everyone involved with
the process – all staff and
patients should be part of
the co-design group.

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Tools

Co-design teams
Co-design teams are groups
of patients and staff that
form around specific areas
of interest that have been
identified through the larger
co-design group. There may
be as many as 6-8 separate
co-design teams working on
specific areas, for example;
dignity when being examined,
safety aspects of procedures,
waiting times or patient and
carer information.

This group comes together to
listen to all of the stories and
information gathered. They
then agree on areas of focus
for improvement.

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Tools

Tools to help raise awareness and
engage people to become involved

Using patient
staff experie
to design bet
healthcare serv

Posters and leaflets act as useful
prompts which lead to further
conversation and discussion about
the approach and the project.
In addition to using posters and leaflets we
have found that it is even better to allocate
time to talk, ‘face to face’ with people about
the ebd approach.
Raising awareness of your plans to use
patient, carer and staff experiences to
improve service delivery is a critical element
of the work. Posters and flyers are useful
mechanisms to both raise awareness and let
people know how they can get involved.

Posters
If patients and staff understand what the
project is trying to achieve then they will be
more open to getting involved. Use notice
boards or display areas that are prominent
within the space that you want to do the
work. You can customise, download and
print a poster from the website.
Alternatively make your own!
Ensure the poster has appropriate
contact details in the space provided.

How can your
experience
of our service
be improved?
We’re running a project, working with patients, carers and staff
to design the best possible care experience for <insert your
own service name here> service. The ﬁrst step is to ﬁnd out
what you like and don’t like about the service.
You can be part of the patient,
carer or staff group that will help
to identify the most important
areas to work on and to decide
what improvements to make.
Let us know if you would
like more information about
how you can get involved.
Using patient and staff
experience to design better
healthcare services

Download this from

the ebd approach

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Tools

Using patie
staff expe
to design
healthcare se

Information leaflets
Information leaflets compliment the
posters. Leave them in an area where
people will be able to pick them up and
read at their leisure. Leaflets contain more
detailed information than the posters
but still invite people to get involved and
provide details about how they can
do this.
Customise, download and print off as many
leaflets as possible, these are a great way to
get people engaged and involved. They can
be taken away and shown to family and
friends.

The ebd approach
is here!
The aim
We want to work with patients, carers and staff to design the best possible care experience
for our patients. The ﬁrst step is to ﬁnd out what you like and don’t like about the service.

How will we achieve this?
We would like to learn more about how the service looks through your eyes, by listening to your
stories and experiences. Your experiences will be used to identify important areas for action and
to decide what improvements to make.

Who will decide what improvements if any should be made?
A group of patients, carers and staff will work
together to identify areas for improvement and
the actions that need to be taken.

How can I help
and what will this involve?
You can help by sharing the story of your recent
experience of care. If you would like to continue
to be involved you can join a group of patients,
carers and staff group who will decide what
improvements to make.

healthcare services

Download this from

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Tool

Capture

53

An introduction to capturing the experience

Experience questionnaire

54

Finding out how your patients are feeling

Patient and staff experience log

56

A tool to help people capture their experiences

Gathering experiences through recording

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The interview process

Interview guide

58

A guide to assist when interviewing patients and staff

Filming your interviews

60

Keeping a record of your interviews

Observation guide

64

Finding out what people really do

52

Patient consent form and patient letter
Gaining consent for interviews, and a letter explaining the project

66

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Tools

Capture

Storytelling is at the heart of using experience to design services and
the whole approach centres around giving patients and staff the time,
encouragement and help they need to tell their experiences in their
own words.
We have found that one of the
most effective ways of gathering
stories is through one-to-one
interviews with patients, carers
and staff. However there are
a range of methods to choose
from to suit your local context.
Capturing people’s stories,
emotions and feelings is key
to being able to use

53

Capture

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Tools

Experience questionnaire
The experience questionnaire is a simple way to find out how your patients
are feeling as they pass through the various steps of the care process.
It won’t tell you everything
and is not a replacement for
other techniques but it will
give some idea of the emotions
experienced by people as they
pass through your service. The
questionnaire is also a way of
asking people if they want to
get involved in your project.

54

What is it?

Why Use it?

The experience questionnaire
is a tool to gather people’s
feelings/emotions at certain
points of the process of care.

By providing an indication of
what people feel at particular
points during the process of
care, it is possible to celebrate
the positives and identify areas
that you will want to find out
more about and improve.

ing the
Teams us nce
experie
ire have
questionna to be
found it
l for
ially usefu rs
espec
care
ients and t stay
pat
shor
involved in r example
fo
services, ht stay or
an overnig ocedures.
pr
day case

It is also a useful tool in
helping to identify the ideal
emotions/feelings you want
to evoke at each point in the
process of care, when designing
a patient journey/pathway.

How do I use it?
You might want to start
by asking 5-10 patients to
complete the questionnaire,
review the information provide
and decide what you might
explore further. A small amount
of this rich feedback can
provide useful information.

1. Download the experience
questionnaire – the word
version is amendable so
that you can make changes
to suit your local context.
You can also choose which
emotion words you would
like to include
2. Print and distribute the
questionnaire to patients
and provide an explanations
leaflet about your ebd
project or verbally explain
the ebd approach

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Tools

5. The questionnaire can be
re-issued to be used as a
measurement tool and/or as
a continuous improvement
approach

how you will use the
information provided
3. Allow the patient time
and space to complete the
questionnaire. You might
also need to provide a pen!

See page 23-24 for an
experience questionnaire
4. The information is collated
you can photocopy
and discussed with staff
and positives are celebrated.
Areas for improvement in
patients’ experience are
identified

the ebd approach

The four steps

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The four steps

How do you feel?
This experience
Arriving/Checking In
questionnaire will
help you think
happy
about how you feel
supported
at different stages
safe
in your journey.
Circle the words that
best describe your
feelings at each stage,
or write your own
words at the bottom.
See page
54 for more
information
on experience
questionnaires

Information

Waiting

Recovery

Going to Theatre

Check Ups

Leaving

happy

happy

happy

happy

happy

happy

supported

supported

supported

supported

supported

supported

safe

safe

safe

safe

safe

safe

good

good

good

comfortable

good

good

good

good

comfortable

comfortable

comfortable

comfortable

comfortable

comfortable

in pain

in pain

in pain

in pain

in pain

in pain

worried

in pain

worried

worried

lonely

worried

worried

worried

worried

lonely

lonely

lonely

lonely

lonely

lonely

sad

sad

sad

sad

sad

sad

sad







Why?
We’d like to know why
you felt like this. Was
it friendly staff, a nice
conversation, or a long
wait – whatever it is
we’d like to know

23

24
Download this from

55

Capture

the ebd approach

Capture

the ebd approach

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Tools

Patient and staff experience log
What is it?
The patient and staff experience
log is a tool used to capture
their experiences of delivering
and receiving care. People are
able to write notes, capture
thoughts and illustrate, through
drawings and doodles, how
they feel.

Why should I use it?
This tool is particularly useful
because it enables a range of
different capture methods to be
used to suit preferences, time
and mood.

How do I use it?
Staff working in any area
are able to use this tool as it
provides the ability to capture
experience throughout the
whole range of their working
patterns over a period of time.

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For patients the log is most
suited for use during health care
episodes that are over a period
of at least several days.
• It is important to stay
connected to people who
are developing their log and
together you should agree a
date when the information
can be shared
• As with any material that
contains patients and staff
personal thoughts and
experiences you should
arrange safe (locked) storage
once the log has been
handed in

Distribution of the experience
log: Maintain a record of who
you provide with an experience
log so that you can maintain
contact with them.
Collecting the experience logs:
Ensure everyone knows where
to return the completed logs
and by when you would like
them to be returned.
Collating data from the
experience logs: Because the
experience logs enable patients
and staff to record their
experiences in a variety of ways
it will be useful to sit down
with the owner to help
understand their emotions and
feelings throughout the process.

Identifying patients and staff:
Make sure all those involved in
the project are invited to use the
Examples of a patient and staff
tool, and ask them to identify
experience log can be download
others who might be interested
from www.institute.nhs.uk/ebd.
in recording their experience
of the service. Contacting
people through someone they
already know often helps with
engagement of hard to reach
groups in particular.
Download this from

the ebd approach

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Tools

The value of the interview One opening statement and
Interviews can take a long
time to set up, undertake and
understand the information
captured. However, teams that
have tried this approach have
found that the richness of the
information that is gathered is
well worth the effort.
This section provides some
simple principles which you can
follow to make sure that your
interview is as successful as
possible and as positive as it can
be for the person sharing
their story.
Although you may want to
carry out the interviews
yourself, it might be useful to
consider asking other staff,
patients or carers to help.
Print out the interview guide
from the website (see next
page) and keep it handy as a
prompt when doing interviews.

question that has worked well
in previous projects is:
“We really want you to tell us
your story in your own words,
with as few interruptions from
us as possible, but we have
some prompts if you would
prefer that. So... let’s begin at
the beginning. Tell us your story
in your own words...”

Capture

Gathering experiences through
voice/audio recording
It is really important to
enable the storyteller tell
their story, so you must avoid
interruptions and your opinions
about anything that is said.
Suspending judgment while you
listen to individuals’ experiences
is essential to being able to get
the most from the stories.

ut
It’s all abo tients
e pa
getting th ber their
to rememience.
exper
: ‘what
stions like ?’ or
So que
l like
did it fee think when
you
‘what did nto the ward
o
you came first time?’
for the d ones.
are goo

57

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Tools

Capture

Interview guide

here
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to
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Interview Guide

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experience b

Using patient and
e
staff experienc
to design better
s
healthcare service

12
2

1

Prior to the interview make sure
that you have the equipment you need:
Interview – paper and pen
Interview and voice recording
ake sure
rview m
Prior to the inte iew make sure u need: – Dictaphone/digital voice recorder
yo
intthe
(check that the microphone is sensitive
Prior sign the ve erv equipment
sed de to
experience ba at you ha
ed: enough to pick up the voices)
th
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havepapeequipmen
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thatterview – download
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In available to
rd g
voice d pen in
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including sound recording, and tripod.
www.institute.nhs.uk/ebd re
Interview and

Interview Guide

2

wnload

available to do

Fold here

Using patient and
staff experience
to design better
healthcare services


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Make
If you are filming the interview read rec
including sound the

3

unnecessary fidgeting). Move away
from noisy appliances like clocks, TVs
and refrigerators. If you can’t then think
about turning them off or if possible
moving them out of the way.

next section (filming your interviews)
before you start.

n on a particular
If the story teller is kee
m stay with it.
topic or issue, let the interview read the
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inqutheions or use prompts
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them off or if
time is available – make sure you keep
about turning
of the improvement work that you
way.
out of the
to the time allocated.
are doing.
moving them

3
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4

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See page 66 and website for more
information about consent.

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See page 66 an
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13
4

58

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space

pa the interview
5 Preforrethe storyteller arrives. Make y
7
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Start each interview by introducing
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think about turning
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Download this from
and
Using patient
e
staff experienc

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Tools

Capture

the ebd approach

Ask your story teller to state the
same information.

Fold here

8

Try to start with an easy introductory
questions to ease the story teller into
the interview, for example:

My name is Bob, I’m 67 years old,
it’s 14th February 2007.

“Have you travelled far?”

9

Stay quiet when the story
teller is talking. Try not to speak
over them because it will make the
recording unclear as well as making
what they say seem unimportant.

10

You may need to use prompts at times
such as; how did that make you feel,
tell me more about that…

Provide non-verbal encouragement
to continue such as nodding your
head and smiling.

11

If you do ask questions, make sure
they are ‘open’ such as “what do you
do?” rather than closed questions
which can be answered with “yes”
or “no”.

Enable the story teller to do just
that – tell you their story.

12
If the story teller is keen on a particular
topic or issue, let them stay with it.
Ask follow up questions or use prompts
as needed.

Using patient and
staff experience
to design better
healthcare services

experienc

13

Manage the time and steer the
interview to a natural close.
Remember to thank the story teller for
their time and for sharing their story
with you.
Make sure that they feel OK before
they leave.

59

Capture

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Tools

Filming your interviews
Successful interviews depend on building up a rapport with your interviewee
– something that can be more difficult if your head is down and you are
frantically scribbling notes.
Audio recording and filming
are both more effective
than note taking alone, a
combination is even better.
Gathering an accurate record
of stories enables you to
identify important experiences,
emotions and insights of the
person’s journey through the
health care process. You will
find that it is this valuable
information that provides the
basis of all other stages of the
ebd approach.

Quick tips on filming
Consent:
Ensure the consent form makes
it clear that the interview is
being filmed and states exactly
how the film will be used in
the future.
See page 66 for
more information
on consent
Security:
The film or any recording should
be stored securely.
See page 63 or
the website for
more information
about the Data
Protection Act

60

Positioning:
The camera needs to be
positioned in the best place to
record the interviewee’s voice
and face, even if it appears to
be prominent. The camera is
usually quickly forgotten once
people start telling their story.

After only a few interviews you
will find that you have large
volumes of film and/or audio
footage. This will need to be
edited in order to draw out
the important experiences and
insights that you will use in the
next stage – understand the
experience. Editing can be time
consuming and does require
some skill.

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Tools

Capture

the ebd approach

For me, the videos have another amazing strength
as a staff training and feedback tool. For instance,
lots of nurses and health care assistants
will instinctively know that holding a patient’s
hand and reassuring them that things will be okay
is a good thing to do. But hearing and seeing
patients recall that part of their experience as a
really important moment, reinforces for staff that
the little things they do really matter.
Glynis Peat, Lead Nurse

Video editing
Once you’ve gathered your
footage being able to edit your
video footage will make it much
easier to use and distribute.
Often there’s someone close
to hand who has experience
of video editing and is willing
to give some support to the
project. Find out if you have an
audio visual department that
might be able to help. Does a
member of your staff have the
skills and/or a camera that can
be used?

61

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Tools

Film is a fairly new medium for most trusts
(including us), and you have to invest a bit
of time getting people used to the idea
of being on camera. We have tended to
phone patients well in advance and ask
them to take a bit of time to consider the
idea before committing either way

The instinctive response of many staff was:
“you can’t film in clinic; it’s not allowed;
patients won’t like it”. But once staff saw
patients were comfortable with the idea, it
wasn’t a big issue. In fact staff (consultants as
well as ward staff) are still talking about the
film and still asking to see it

62

Think about who else you
could approach to provide
support:
Is there a University or College
near by that you could work
with? Often students are keen
to work on a project that has
some real purpose. Find out the
name of the tutor of the most
relevant course (media studies/
film/multimedia) and ask if it’s
something their students might
be interested in. Editing this
footage is a big responsibility so
make sure that you are happy
with whoever is recommended,
and that they agree to work
within your clear ethical
principles for the project and
agree a clear timetable.
See page 15 for more
information on ethical issues

What do you need
to know about data
protection?
The Data Protection Act 1998
came into force on 1 March,
2000. The Act governs the
collection, retention and
transmission of information
about living individuals and the
rights those individuals have to
see this information.

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Tools

There are eight key principles
which anyone who interviews
patients, carers or staff must
adhere to – these principles can
be found at:
www2.warwick.ac.uk/
services/gov/legalservices/
whentouse/dataprotection/
dpprinciples.

t
ber tha s
Remem viewee
r
all inte e their
v
must gi consent
explicit any data
before ovide can
they pr used.
be

See page 66 for
more information
on consent

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Tools

Observation guide
Another way of understanding what happens within your service is to
observe. This will add to the information that you gather from other ‘capture’
tools and it will also result in new insights.
Observation lets you find out
what people really do and
how they carry out their work.
Observation inspires new ideas
and can help to redefine the
problem or challenge that you
are working on. Observation
as a technique is used in many
different settings especially
within the design industry.

If you want to find out about
water, don’t ask a fish.
Chinese proverb

When you are trying to design
services, you often find that:
• People do not always do what
they say they do
• People cannot always tell you
what they need
• Things are not always as
they seem
(adapted from IDEO design company)

How can you
use observation?
There are two main reasons for
carrying out observation:
• Observation for understanding
– stand back and observe
what is really happening
in your area of interest.
Look at the area with ‘fresh
eyes’ and from different
perspectives – for example
the patient, visitor, porter,
clinician (see the Thinking
Differently guide available
from www.institute.nhs.uk/
thinkingdifferently)
• Observation for inspiration
– look at other situations
or organisations and see
what ideas you can adapt
Think about how a growing
number of organisations have
taken ‘lean’ principles from the
manufacturing sector and

adapted them for healthcare in
order to reduce waste and
increase efficiency. What can we
learn from hotels in relation to
hospital bed usage? How can
we learn from airports or
shopping centres about parking?

Using observation for
experience
Observation is a very important
tool when working with patient
and staff experience. It can
help you to really understand
different perspectives, but also
to prompt patients and staff to
talk about their experience of
specific elements of a service.
When observing the clinic area
during one of the projects it
was noticed that patients were
on view when being weighed.
When gathering experiences,
this was not mentioned.

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Tools

You often cannot see
the wood for the trees
However when patients were
asked how they felt, they then
said they felt conspicuous and
embarrassed. As a result of this
observation and feedback,
every set of weighing scales
in every clinic was moved
within 24 hours.

• Be careful not to jump to
conclusions or solutions.
Observation helps to inform
you but you need to work
with others to understand
what changes to the service
may be useful.

• Look out for pauses, obstacles,
body language, what people
care about, how they have
adapted their environment
to make it work for them.
Be aware of things that
surprise you.

The key element in all
observation is being out there
The key points about
in the actual environment,
using observation
talking to the people who
• When working with others
• Take a step back and look
actually deliver or receive
get them to show you what
at what is happening with
care. This makes sure that
they do rather than telling
fresh eyes. You may know the
any improvement is always
you. Being in the place where grounded in what actually
system very well indeed, but if
things actually happen ensures happens and what is important,
you are a patient or carer who
you get what happens, rather rather than what people think
has not been before what
than what people think
would you see? Try imagining
happens or think is important.
happens, or what they would
you are a visitor, or a child or
The NHS Institute has
like to happen.
someone else – what do you
developed a tool which provides
notice?
• Always keep an open
more information about the
mind. Try not to correct
• Try just sitting somewhere
value of observation and
misinterpretations. It is
and watching what goes on
contains an easy to use exercise.
important to understand that
around you.
See www.institute.nhs.uk/
someone’s experience is their
• Don’t forget your other
building_capability/
‘truth’, even if from your
senses, think about what you
thinking_differently
perspective as a healthcare
hear or smell. How do you feel
observation.html
professional it is different.
when you put yourself into
other people’s shoes?

65

Capture

the ebd approach

Capture

the ebd approach

|

Tools

Patient consent form
Use this form to gain
consent from patients
for interviews.
There is also a separate consent
form for filming available on
the ebd approach website.

Using patient
staff experi
to design be
healthcare ser

Consent form for interviews
1 COPY FOR PARTICIPANT, 1 COPY FOR INTERVIEWER

_________________________________________________
TITLE OF PROJECT

_________________________________________________
INTERVIEWER (NAMED INDIVIDUALS CONDUCTING THE INTERVIEWS)
PLEASE
INITIAL

1

Write the name of
your project here
Write the name of
the person conducting
the interview here
Ask people to read
the statements and
tick/cross these boxes
Participant to sign here
Interviewer to sign here

I confirm that I have read and understood the information sheet for
the above project and have had the opportunity to ask questions.

2

I understand that my participation is voluntary and I am free to
withdraw at any time.

3

I understand that I can ask for any comments I have made on tape,
in writing or on film to be removed.

4

I understand that my comments (or part of them) may be used in different
formats such as video, paper and/or electronic to share with others the benefits
of designing services that are based on patient experience. This will include
staff in health and other related industries both within and outside the UK.

5

I understand that any of my comments used may be edited and will
appear anonymously.

6

I agree to take part in the above study.

_____________________________________ ______________ __________________________
NAME OF PARTICIPANT

DATE

SIGNATURE

_____________________________________ ______________ __________________________
NAME OF INTERVIEWER

DATE

SIGNATURE

healthcare services

66
Download this from

Download this from

the ebd approach

|

Tools

This letter can be used
to explain the project to
patients when asking
them to participate in
telling their story.

Capture

Patient letter

Using pat
staff exp
to design
healthcare s

Dear

________________________________________________________________

You can find this letter as
a word template on the
website – you are able to
adapt the template to suit your
local context. There are also
paragraphs which can be used
if you decide to use film as well
as tape recording.

TITLE OF PROJECT

Thank you for recently expressing an interest to [named staff member], in the work we are
doing on improving services for patients in [relevant health care organisation]. We enclose a
patient information sheet summarising our project.
As part of this work it would be very helpful if we could come and hear about your own
experiences. We have enclosed some suggested topics and issues that you might like to talk
about or you might prefer to just retell your story. We think that it will take about an hour of
your time and we would like - with your consent - to tape record our conversation so that we
can try to make improvements to services based on your own experiences in your own words.
Any tape-recordings will be treated as confidential and remain anonymous.
[Delete if not using film] We are also hoping to film patients whilst they are talking about their
experiences, so again with your consent we would like to film our conversation with you when

Write the name of the person
this letter is for
Write the name of your
project here

we meet. The film will be returned to you so that you can view it and decide whether and
where it can be used. Again we would emphasise that your participation is entirely voluntary
and that none of the film will be used without your prior permission.
Regards,

Sign your name here
healthcare services

Download this from

67

Tool

Understand

Tools to help understand experiences

69

An introduction to understanding experiences

How to run experience events

70

Patients and staff meeting together to produce a list of priorities for change

68

Emotional mapping session

76

How to run an emotional mapping session to understand people’s journeys

Experience based design guide

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